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Newsletter N° 49 | March, 2023 |
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Feature article: A brief overview and discussion about the administration of epilepsy "rescue medication" in schools, colleges, camps and other public settings
If you have a child who is attending school, college or camps or you are an adult attending college, it is important to read this article. For our March newsletter issue we are very fortunate to have invited writer, Cindy Fine, who generously agreed to research and write up an overview of what can be a very concerning, confusing, and frustrating topic. Cindy Fine is the mother of a 27-year-old daughter who experienced frequent seizures as a young child and is at risk of prolonged seizures in the event of illness. She was a tax attorney for 15 years after finishing law school, took a decade off from work to care for her daughter, and returned to part-time work doing legal research and writing for the Education Law Center, a nonprofit organization in Newark, NJ
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| Memory remediation program: Neuropsychologist, Dr. Robert Trobliger is offering a memory remediation program for persons living with epilepsy and seizures. |
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One of the most frequent complaints that the epilepsy doctor hears from patients regarding cognition is about memory loss. Problems with memory can be felt day to day in things such as forgetting to take medications, missing appointments, or misplacing important items such as keys or paperwork. Some patients also report that they have difficulties with word finding ("I know what I want to say, but just can't seem to come up with the right word"), language comprehension ("I have trouble understanding what I've read) or paying attention ("I find myself zoning out when watching T.V. or having a conversation with a friend"). But by far, memory problems are the most noticeable concern in epilepsy.
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| Our epilepsy and seizures community of patients, family, friends and doctors has been busy! |
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Epilepsy on the move! Our community of epilepsy and seizures members is composed of patients, family members, friends and doctors. And over the past few months, our group has certainly been busy! The two biggest items in early 2023 are the Northeast Regional Epilepsy Group and partner, Mid-Atlantic Epilepsy and Sleep Center have continued to offer their Wellness in Epilepsy Program. As a result, they held their second virtual book club in February. Also, International Epilepsy Day on February 13 was celebrated allowing us to join this ever-expanding global initiative.
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Support Groups
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VIRTUAL SUPPORT GROUPS
PSYCHOGENIC NON-EPILEPTIC SEIZURES (PNES) SUPPORT GROUP
Fourth Wednesday of the month from September until June: From 12-1 PM
The group is only for patients at our NEREG Psychogenic non-epileptic seizures (PNES) program. They have been diagnosed with PNES and have completed their treatment at the NEREG PNES Program. To register or obtain more information: lmyers@epilepsygroup.com
EPILEPSY ADULT SUPPORT GROUP (for patients and loved ones)
Third Wednesday of the month from September until June: 12-1PM
On the third Wednesday of every month (through June 2023), NEREG hosts a virtual epilepsy support group for adults living with epilepsy and their loved ones. To inquire about it or to join, email lmyers@epilepsygroup.com. Next meetings will be on: March 15, April 19, May 17 and June 21.
The group is for persons with epilepsy (or loved ones) who wish to connect virtually with others also living with epilepsy. The group meets to touch base, to go over challenges that may have arisen for group members associated with epilepsy, for sharing of resources, and for general support and camaraderie.
Joining a group is easy!
Benefits:
• All 60-minute sessions are held through GoToMeeting®
• Each group is kept small in order to encourage friendship and optimal discussion time (8-10 participants.)
• All groups are led by a facilitator who is knowledgeable about psychogenic non-epileptic seizures.
• Confidential.
• Participation in this facilitated discussion is expected and encouraged. You can have your camera on or off-your choice.
• FREE
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Stay tuned: There are plenty of upcoming activities that you may want to jot down and keep in mind over the next few months. NEREG will be hosting a virtual conference on psychogenic non-epileptic seizures (PNES) in April. Book club members voted on the book for the next book club meeting that will be held in May 2023. The next chosen book is "A smell of burning: a memoire of epilepsy" by Colin Grant. Also, our virtual support group for adults living with epilepsy (and their loved ones including spouses, parents, and other family members) will run through June of 2023 and then take a break for the summer months of July and August. And last but not least, PURPLE Day, a day to celebrate and raise awareness for epilepsy is just around the corner on March 26 which is when Epilepsy Services of NJ will be hosting the PAINT THE PONY PURPLE at the Stone Pony in New Jersey.
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Launched in 1998, Northeast Regional Epilepsy Group (NEREG) is a multi-site practice in New Jersey, New York and Connecticut that offers unique services and comprehensive care to children and adults with epilepsy. NEREG provides state-of-the-art diagnostic procedures, 24/7 patient service, highly skilled and experienced practitioners, and exceptional specialty programs designed to cover a broad range of health care needs in each epilepsy patient. NEREG consists of twenty board-certified epilepsy specialists with fellowship training in adult and childhood epilepsy, as well as many other highly skilled health care providers including pediatric/adult neurosurgeons, neuropsychologists, clinical psychologists, epilepsy nurse practitioners, a specially trained nutritionist and epilepsy advocates.
Launched in 2003, Mid-Atlantic Epilepsy and Sleep Center (MAESC) is a practice located in Bethesda, Maryland that offers neurological services and comprehensive care to children and adults. MAESC consists of six board-certified neurologists who treat epilepsy, multiple sclerosis and other neurological illnesses.
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20 Prospect Avenue, Suite 800
Hackensack, New Jersey 07601
Tel (201) 343-6676 / Fax (201) 343-6689
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333 Westchester Avenue, Suite E104
White Plains, NY 10604
(914)4289213
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